Living with hypothyroidism can take over our lives at times. Some of us get better rather quickly with treatment, whereas others can take months or even years to start feeling better. Treatment is very much individual.
For many of us, it changes our lives. Sometimes temporarily but for many, permanently, whether in many, major ways or a few, small ways.
So, to those of you who have a friend or family member with hypothyroidism, I imagine it can be frustrating having your once very reliable and sociable friend, now not-so reliable, not-so available and not-so sociable.
As you read this brief list, I ask that you remember that the person you know with hypothyroidism did not ask for this disease, and they are just as gutted as you are, that they have it and it affects their life so much. If not more. It’s not their fault.
They never in a million years thought they would wake up one day too unwell to function like they used to, and have a battle in trying to return to as close to full health as they can. Which seems impossible most the time.
1. We don’t like cancelling on you.
Living with thyroid disease can be unpredictable. We might feel well one day and then be struck down the next. We may feel quite well when we first agree to certain plans with you, and then a few days before, or on the day itself, we become really unwell. Mentally, physically, emotionally… going would make us more unwell.
If we have to pull out, we shouldn’t feel bad about it. If someone else had to pull out because they had a sickness bug, or a diarrhoea bug or the flu, then people would be understanding. Some of us live with flu symptoms every day of my life, and yet, we can be put down for needing some ‘me’ time. A good friend would understand that. They wouldn’t want us to make ourselves anymore ill by pushing things. They’d understand our struggles or at least sympathise and encourage us to rest.
People may think we’re cop-outs, lazy or just not making the effort when we have to cancel plans, but when this is our life, we have no real control over how we feel on that particular day and we are not to blame.
If we cancel plans unannounced, it doesn’t mean we don’t want to see you.
2. Turning up unannounced isn’t a fun surprise and neither are last minute plans.
It might seem odd that, given my explanation of how we may even need to cancel on longstanding plans above, that last minute plans aren’t really useful either.
In order to prepare for a social event, meeting or a quick catch up, it can take us days or even weeks of preparation. We’ll be resting as much as we can before the day so that we’re able to make it as much as possible, but we also need to plan rest days afterwards to recuperate. Social situations can be draining for us in every single way – emotionally, mentally and physically.
So turning up on our doorstep out the blue, when we haven’t had the chance to prep, get the energy to wash and get dressed or tidy the house, is anxiety-inducing.
And asking us on Saturday morning if we want to meet for lunch that day likely isn’t great either. Again, we need to prep and rest for days before.
3. We have up and down days/weeks/months.
Hypothyroidism, especially the autoimmune kind (which is what around 90% of us have), can flare up from time to time. Sometimes we know the triggers i.e. gluten or alcohol, so we avoid them and are able to limit flare ups to some extent. But we don’t always know what causes them, or we have a crash, where we’ve done too much lately and come to a complete halt, practically sofa-bound.
This means that whilst I was well enough to go to a gig last week, as well a night out with friends, or I’ve had a month of being really sociable, it doesn’t automatically mean I’m well enough this week or this month, like a normal person.
You have to treat each day individually where living with thyroid disease is concerned, so don’t think we’re being rude if we turn down your invite so we can rest up, when you saw we were ‘well enough’ to be out earlier in the week. Like I said above, we have to schedule in rest days or we’ll make ourselves more ill.
4. We appreciate thoughtful gestures.
Asking us how we are, suggesting we schedule in a phone call catch-up or sending a card or a little something in the post, can really remind us that there are people who do care and there is still goodness in the world, when we feel so low and controlled by our health conditions. As thyroid patients, we may feel like a burden sometimes, or disregarded by friends we don’t get to see as much. Sending things in the post is something I don’t think we do enough of these days, as it’s becoming much less common. But receiving a mystery card, letter or parcel is somewhat magical and knowing someone has thought of you is heartwarming. It’s simple, but says a lot.
Other thoughtful gestures can include running us a bath if you live with us (would be a bit weird if not!), making us a cup of tea or just making time to check that we’re OK. We have a tendency to clam up and not disclose everything we’re going through, but being able to speak about it to someone every once in a while is a healthy release. And even better if it’s a trusted friend.
This post was originally written for The Mighty.
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I also run a group for the spouses, partners and other halves of hypothyroid patients, called Hypothyroid Patients Other Halves – Support & Advice Group. This is for the other halves only and not patients.